Rallly and a decline

kab2022

My LO has been in a Memory Care Facility for about 2 months. When she was first moved there, she didn’t really know where she was but was very involved in activities and talking and eating very well.  However in the last month she has had a decline to the effect that she is now confined to a wheelchair, barely able to communicate and honestly doesn’t appear to be able to focus on anything. She is on hospice and her nurses say that maybe she had a rally period when she originally moved into facility and then quickly declined. Has anyone heard of this? It’s like her dementia has progressed so much in a matter of a month. She is located about 4 hours away and is near my 3 siblings (who don’t visit on a regular basis) I go about every 2 weeks and spend time with her at the facility. I have been looking to possibly move her here but I’m afraid that another move could cause her to have another decline. Is that possible?

BassetHoundAnn

Has she been tested for a UTI? That can be the cause of a very sharp decline in a very short period of time. 

So can many other types of infections like respiratory infections. 

My mom has sudden declines followed by rallies followed by declines, repeat. This has been going on for years. Sometimes a UTI is to blame. Other times no apparent reason. 

towhee

Declines and upswings are fairly common with dementia, and can be caused by many things, including infections, TIAs, pain, dehydration, etc. Occasionally the cause can be medications. Medication errors and side effects do sometimes occur. You might want to determine the medications she is currently taking and whether there have been any changes since coming to the facilty, even just a change in dosage. The facility will have this information but it might take a little effort to get, whoever has her healthcare POA should ask for it. You also want the medication administration record (MAR), which should tell you exactly when each medication is taken. Medications affect people differently and effects can also change over time. Another thing is that hospice can have a standard medication "kit" which they want available to facility medical staff as needed, usually this is a heavy duty pain med, and something for agitation/anxiety. In rare cases the staff idea of as needed and your idea of as needed may not be the same. The mom of a friend had both Tylenol and a heavy duty pain med (left over from a broken arm) on her list of meds and the weekend nurse would give her the heavy duty pain med instead of the Tylenol. Both were as needed. It took a while to figure out why she was always groggy on the weekends. This is an extreme long shot but I thought it might help to feel you have done everything you can. 

As to moving your mom, if she is getting good care where she is, a four hour trip and having to get used to a new facility might not be the best thing. If you cannot count on your family, might you hire someone to visit to let the facility see that things are being monitored, and to let you video visit with your mom? She might not be able to respond, but you would feel better being able to see her.

harshedbuzz

kab2022 wrote:

My LO has been in a Memory Care Facility for about 2 months. When she was first moved there, she didn’t really know where she was but was very involved in activities and talking and eating very well.

This sounds very similar to my experience with my dad. He was ambulatory, self feeding, chatty with staff. Unlike your mom he had a sense that he was in a medical facility of some sort and wasn't interested in going to activities though he did enjoy the live music they offered most days. He was also very angry initially and hypervigilant in the first 2 weeks. 

 However in the last month she has had a decline to the effect that she is now confined to a wheelchair, barely able to communicate and honestly doesn’t appear to be able to focus on anything.

This also mirrors my experience. About 6 weeks into dad's stay in MC, he seemed to have had a significant decrease in abilities across the board. He was still very verbal but unsteady on his feet and less engaged even with us. His facial features and even body shape changed so that he didn't really look like him. He was not on hospice and when he died a month later staff were surprised. He developed silent aspiration and died from the resulting pneumonia. 

She is on hospice and her nurses say that maybe she had a rally period when she originally moved into facility and then quickly declined. Has anyone heard of this?

See above. I also saw this pattern of more obvious declines in my 2 aunts who had vascular dementia. Both tended to plateau for a period and then wake up one day with a significant loss of cognition and skills in a kind of stair step pattern. My nice auntie progressed very slowly but her meaner older sister passed less than a year after her diagnosis in middle stages and only a few months into a SNF. 

 It’s like her dementia has progressed so much in a matter of a month. She is located about 4 hours away and is near my 3 siblings (who don’t visit on a regular basis) I go about every 2 weeks and spend time with her at the facility.

Sometimes when a person has a progressive disease and you are not able to visit as often as you'd like, the changes visit-to-visit are stark compared to a situation where you see your LO daily. We has this when MIL was dying; he condition changed a lot between visits. Your sibs might not share your sense of urgency if they see her weekly. That said, dad had a visitor daily-- mom and I took turns popping in to see him.

I think sometimes when a person seems to progress more rapidly with a move to MC, it's a chicken-or-the-egg situation. Perhaps the continued disease progression that drove the decision for placement are what you are seeing and not the result of placement or a lack of visitors. That said, I would still ask that she be checked for a UTI or other infection if this feels sudden to you.

Do you think I have been looking to possibly move her here but I’m afraid that another move could cause her to have another decline. Is that possible?

Maybe. Maybe not. My caregiving guardian aunt moved the nice sister to a MCF nearer her which was about a 3 1/2 hour drive. They hired an ambulance for the trip and she rode along with her. Auntie was not so far along and did well with the transition to the new and very very nice MCF. The logistics were a challenge because her guardian needed to establish guardianship in her own state before moving. Do you have POA or guardianship? Auntie had plenty of assets, so dealing with Medicaid was not an issue but it could be for some families. And of course you would need to establish care with a new hospice service. 

I'm normally breezy compared to most about moving PWD, but once hospice is called in and the PWD has aides with whom there is some relationship I would not move her without a compelling reason. She could pass at any time and you wouldn't want to feel like you or anyone else to believe you had a hand in hastening death. 

HB

dayn2nite2

I also am normally of the opinion that you want to move your LO when there are people nearby who won't make an effort to visit, but in this case I probably wouldn't.

The rally/decline is probably normal for whatever flavor of her disease is.  The sibs who don't visit - they will regret when she's gone and you will sleep well.

If her care is good, at this stage and being on hospice I wouldn't opt to move.  If she was much earlier and not on hospice I might consider, but now I vote no.

You are doing the best for her that you can and that is what matters.  Your effort will help you feel okay when it's over.  Like I said, if they have any ability to reflect upon themselves afterward, they are not going to feel okay with themselves.

If they are not self-aware, they will sleep well (falsely).

kab2022

Thank you for the comments - I did ask about possible infections and even constipation but it has been ruled out as the cause. They did say that she appears to be in pain lately but said that’s very common at the later stages of dementia.  It sounds like this is a normal progression of the the disease - it just seems to be very quick to me. She is getting very good care and I do like the facility and hospice team that are taking care of her. I was mostly concerned about the lack of visitors by family. I am going to reach out to the caregiver that I had originally had set up to see if she’d make visits to the facility so there’s more of a presence there. Thanks for that suggestion.